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hi there, I have been on Otezla now for around 3 years and now have a Lymphocyte count of 1.0. I have no idea what that means other than I cannot be prescribed the recommended non biological. Has anyone else experienced this, any advice appreciated, with thanks for your time reading.
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Tue-04-02-2020, 23:21 PM
(This post was last modified: Tue-04-02-2020, 23:35 PM by jiml.)
Hi Jac I can't understand why as your lymphocytes are within the normal range of between 1 and 3 although I don't know what readings you have previously had and if there is a trend downward they may be being cautious
I'm not on otezla but I'm on skilarence and have to watch my lymphocyte count and vary my dose to keep the figure over one mine runs at around 1.1 and 1.2
So I would have thought reduce the size of dose a bit and see if the lymphocytes recover
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By the way I think Fred will move the thread to prescribed treatments where it is more likely to be seen
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Thank you, my reading was 1.0 and they said that it was too low to prescribe fuscillic ? Acid as I was due to change. Was worried as I have lots of other negative symptoms and other negatives in blood including liver but kidney ok. I do not even know the Lymphocyte range but they provided me with that unhelpful detail. Thank you for more info than has been provided previously. I have positive effects from uv and hope to get another dose soon, although I know it's the inside that counts too.
Kindest regards and I hope you are managing the skin you are in.
Thanks for the helpful message
Jacqueline
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Tue-04-02-2020, 23:42 PM
(This post was last modified: Tue-04-02-2020, 23:43 PM by jiml.)
(Tue-04-02-2020, 23:37 PM)JacG Wrote: Thank you, my reading was 1.0 and they said that it was too low to prescribe fuscillic ? Acid as I was due to change. Was worried as I have lots of other negative symptoms and other negatives in blood including liver but kidney ok. I do not even know the Lymphocyte range but they provided me with that unhelpful detail. Thank you for more info than has been provided previously. I have positive effects from uv and hope to get another dose soon, although I know it's the inside that counts too.
Kindest regards and I hope you are managing the skin you are in.
Thanks for the helpful message
Jacqueline
Always happy to help if I can and as I have to watch my bloods, and thought the info might be useful any questions don't hesitate to ask
Jim
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Note to Fred
Perhaps move this to [thread=4986]
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Hi Jacqueline,
It is exactly what jim has written. Lympho’s between 1 and 3 are really fine.
But there may be an interaction with other values in your blood. But if the other values are within normal ranges I don’t see what their point is.
Write the question down and ask the doctor to explain what he/she means.
UV is a good treatment but you only can have a certain amount of sessions. The radiation is quite harsh and your skin will suffer from that.
I don’t think fusillic acid exists, but I think he means fumeric acid, in the form of dimethylfumarate, which would be a very good option to continu with. But also DMF has the side effect that it will lower your lympho’s and the rules say that you should not be lower than 0.7
I would expect the doctor would follow the strategy tot stop a prime me last (Otezla) for whatever reason, indeed give you some UV in the mean time and have your lymphos and other values recover and than put you on DMF. That seems logical to me.
Cheers,
Caroline
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(Tue-04-02-2020, 23:47 PM)jiml Wrote: Note to Fred
Perhaps move this to [thread=4986]
I have left it as a new thread as it is a different question. This one is asking more about Lymphocyte count which is not mentioned in the other one so it could get missed if I merged the threads.
PM sent to those that had posted.
Fred.
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Thank you all for feedback. I have appt in March to discuss new strategy, biologists anyone have experience or recommendations.